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Why It’s Important to Continue Universal Autism Screening While Research Fully Examines Its Impact

Why It’s Important to Continue Universal Autism Screening While Research Fully Examines Its Impact McPheeters et al1 provided a systematic review of the evidence that was used by the US Preventive Services Task Force (USPSTF) to make its recent recommendations on universal autism screening.2 The USPSTF concluded that there is currently insufficient evidence to assess the benefits of universal screening for autism spectrum disorder (ASD) in young children. In particular, the USPSTF noted that no study has directly compared the long-term outcomes of screened vs nonscreened children and, further, studies of the efficacy of early ASD treatment have not been based on samples identified through screening. Thus, the USPSTF concludes that the long-term benefits and harms of screening in the general population cannot yet be determined. The report was met with considerable controversy. The president of the American Academy of Pediatrics (AAP) promptly issued a statement noting that the USPSTF recommendations “run counter to AAP guidelines” and that the “AAP remains committed to its recommendation for the timely screening and identification of children who benefit from early intervention and treatment.”3 Autism advocacy organizations and US Reps Chris Smith and Mike Doyle, co-chairs of the Congressional Autism Caucus, urged the USPSTF to reconsider their recommendations on universal autism screening. What then is the basis of this controversy? The AAP and other professional and advocacy organizations that support universal autism screening have based their current practice guidelines on several research findings, which are described in the review by McPheeters et al.1 First, autism is a prevalent condition, affecting 1 in 68 children in the United States, and associated with significant short- and long-term burdens.4 The lifetime cost of supporting an individual with ASD is estimated to be $1.4 million. That cost is $2.4 million for those who also have an intellectual disability.5 Second, current autism screening tools, while not perfect, adequately detect ASD in children between approximately 18 and 36 months in age.6,7 The most commonly used tool is a parent questionnaire that requires little training by the health care professionals and takes less than 5 minutes to complete. If a child’s score falls in a questionable range, then an additional 5 to 10 minutes of follow-up questions are needed. Large studies conducted in community primary care settings have found that, of those children who fail the screen, about 50% will be diagnosed with ASD, and 98% will have an actionable developmental concern.6,7 Although the data on false negatives are scant, the available evidence suggests that the current screening tool does not miss a substantial number of children. All children who fail the screen can be referred for infant-toddler assessment and intervention services through Part C of the Individuals with Disabilities and Education Act, a program supported by a federal grant established in 1986 by Congress. Third, studies have shown that screening leads to earlier referral and diagnosis.8 Most children identified through screening have not been previously identified by either the pediatrician or a parent. Children who are screened, on average, are diagnosed earlier and thus receive services at an earlier age. This finding is especially significant for African American and Hispanic children, who tend to be diagnosed and access services at a later age than do white children.9 The majority of states have passed legislation that mandates insurance benefits for early intervention for children with diagnosed ASD. Finally, studies evaluating the efficacy of early intervention show significant improvements in cognitive and language outcomes, and a younger age of enrollment in treatment has been shown to result in better outcomes.10,11 In short, research has shown that universal screening leads to earlier diagnosis and earlier access to intervention and, further, that earlier intervention leads to better outcomes; however, no study has yet been conducted that examines whether screening, per se, leads to better outcomes. Such a study would require a large representative group of children from the general population to be randomly assigned to receive or not receive autism screening and then be followed up longitudinally to assess the impact of screening on the long-term outcomes of these children and their families, as well as the overall societal cost. Studies on the efficacy of early intervention in samples of children younger than 3 years who were identified through screening are also needed. Interventions appropriate for children with ASD younger than 3 years have been developed and evaluated. A systematic review of 24 studies related to intervention for children with ASD younger than 3 years was recently published.12 Compared with interventions for preschool-aged children, interventions for children younger than 3 years more often intensively involve parents and use naturalistic developmental behavioral approaches.13 Such interventions usually are delivered by parents in the context of everyday routines and the parents’ interactions with their children, and all are designed to promote learning, engagement, and communication and reduce behavioral challenges. The review identified 6 randomized clinical trials that assessed the efficacy of intervention in children with ASD younger than 3 years, with treatments ranging from 8 weeks to 2 to 3 years in their duration. All of these trials reported significantly improved outcomes relative to the comparison groups. Effect sizes for the domains of joint attention (a core symptom of autism) and expressive language were moderate to large. Other research has shown that access to early intervention for children younger than 3 years also results in reduced parenting stress.14 While further research on the long-term impact of universal ASD screening is certainly warranted, research on several other questions related to ASD screening and early intervention is also sorely needed. First, future studies should capitalize on the recent advances in technology and our understanding of the genetic and biological bases of ASD to improve screening accuracy and decrease the age of detection even further. The development of early intervention methods for infants at risk for ASD is currently under way.15 Second, the reasons for the discrepancies in age of ASD diagnosis for children of differing ethnic/racial and economic backgrounds need to be better understood, so that early access to treatment can be provided in a more equitable manner. Third, most studies on ASD screening report that a substantial number of parents do not promptly pursue a diagnostic evaluation after learning that their child failed an ASD screen. Strategies for improving the rates of follow-up for diagnostic assessment postscreening should be examined and tested. Fourth, the development and evaluation of broader service system interventions that are feasible and scalable and rapidly engage children with ASD younger than 3 years in early intervention are needed. Finally, because many communities do not have access to professionals fully trained in the direct delivery or coaching of parents in providing treatment for young children with ASD, there is a need for innovative methods to increase the access to early intervention in low-resource communities worldwide. In conclusion, although studies that directly compare the long-term outcomes of screened vs nonscreened children in the general population are needed, there is ample evidence that justifies the continued practice of universal autism screening as recommended by the AAP. Studies indicate that available screening tools do identify children with ASD who would have been otherwise missed and children who begin intervention at an earlier age have improved outcomes. The current guidelines that encourage universal autism screening offer the best chance for individuals with ASD to reach their full potential and lead productive lives. We should, therefore, stay the course while continuing to advance our knowledge about the full impact of autism screening. Back to top Article Information Corresponding Author: Geraldine Dawson, PhD, Duke Center for Autism and Brain Development, Duke University School of Medicine, 2608 Erwin Rd, Durham, NC 27705 (geraldine.dawson@duke.edu). Published Online: February 16, 2016. doi:10.1001/jamapediatrics.2016.0163. Conflict of Interest Disclosures: Dr Dawson has received authorship royalties from Guilford Publications and Oxford University Press and is on the scientific advisory boards of Janssen Research and Development, Roche Pharmaceuticals, Akili Inc, and Progenity Inc, for which she receives travel reimbursement and honoraria. Disclaimer: This Editorial was written as a faculty member of Duke University. The opinions expressed in this article are those of the author and do not reflect the official position of Duke University. References 1. McPheeters ML, Weitlauf A, Vehorn A, et al. Screening for Autism Spectrum Disorder in Young Children: A Systematic Evidence Review for the US Preventive Services Task Force: Evidence Synthesis No. 129 [AHRQ Publication No. 13-05185-EF-1]. Rockville, MD: Agency for Healthcare Research and Quality; 2016. 2. Siu AL; US Preventive Services Task Force (USPSTF). Screening for autism spectrum disorder in young children: US Preventive Services Task Force Recommendation Statement [published online February 16, 2016]. JAMA. doi:10.1001/jama.2016.0018.Google Scholar 3. Hassink S. AAP statement on US Preventive Services Task Force draft recommendation statement on autism screening. https://www.aap.org/en-us/about-the-aap/aap-press-room/pages/AAP-Statement-on-U-S-Preventive-Services-Task-Force-Draft-Recommendation-Statement-on-Autism-Screening.aspx. Published August 3, 2015. Accessed January 2, 2016. 4. Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators; Centers for Disease Control and Prevention (CDC). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveill Summ. 2014;63(2):1-21.PubMedGoogle Scholar 5. Buescher AV, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr. 2014;168(8):721-728.PubMedGoogle ScholarCrossref 6. Robins DL, Casagrande K, Barton M, Chen CM, Dumont-Mathieu T, Fein D. Validation of the Modified Checklist for Autism in Toddlers, Revised With Follow-up (M-CHAT-R/F). Pediatrics. 2014;133(1):37-45.PubMedGoogle ScholarCrossref 7. Chlebowski C, Robins DL, Barton ML, Fein D. Large-scale use of the Modified Checklist for Autism in Low-Risk Toddlers. Pediatrics. 2013;131(4):e1121-e1127.PubMedGoogle ScholarCrossref 8. Miller JS, Gabrielsen T, Villalobos M, et al. The each child study: systematic screening for autism spectrum disorders in a pediatric setting. Pediatrics. 2011;127(5):866-871.PubMedGoogle ScholarCrossref 9. Mandell DS, Listerud J, Levy SE, Pinto-Martin JA. Race differences in the age at diagnosis among Medicaid-eligible children with autism. J Am Acad Child Adolesc Psychiatry. 2002;41(12):1447-1453.PubMedGoogle ScholarCrossref 10. Rogers SJ, Estes A, Lord C, et al. Effects of a brief Early Start Denver model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: a randomized controlled trial. J Am Acad Child Adolesc Psychiatry. 2012;51(10):1052-1065.PubMedGoogle ScholarCrossref 11. Aldred C, Green J, Emsley R, McConachie H. Brief report: mediation of treatment effect in a communication intervention for pre-school children with autism. J Autism Dev Disord. 2012;42(3):447-454.PubMedGoogle ScholarCrossref 12. Zwaigenbaum L, Bauman ML, Choueiri R, et al. Early intervention for children with autism spectrum disorder under 3 years of age: recommendations for practice and research. Pediatrics. 2015;136(suppl 1):S60-S81.PubMedGoogle ScholarCrossref 13. Schreibman L, Dawson G, Stahmer AC, et al. Naturalistic developmental behavioral interventions: empirically validated treatments for autism spectrum disorder. J Autism Dev Disord. 2015;45(8):2411-2428.PubMedGoogle ScholarCrossref 14. Estes A, Vismara L, Mercado C, et al. The impact of parent-delivered intervention on parents of very young children with autism. J Autism Dev Disord. 2014;44(2):353-365.PubMedGoogle ScholarCrossref 15. Green J, Charman T, Pickles A, et al; BASIS team. Parent-mediated intervention versus no intervention for infants at high risk of autism: a parallel, single-blind, randomised trial. Lancet Psychiatry. 2015;2(2):133-140.PubMedGoogle ScholarCrossref http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA Pediatrics American Medical Association

Why It’s Important to Continue Universal Autism Screening While Research Fully Examines Its Impact

JAMA Pediatrics , Volume 170 (6) – Jun 1, 2016

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References (18)

Publisher
American Medical Association
Copyright
Copyright © 2016 American Medical Association. All Rights Reserved.
ISSN
2168-6203
eISSN
2168-6211
DOI
10.1001/jamapediatrics.2016.0163
Publisher site
See Article on Publisher Site

Abstract

McPheeters et al1 provided a systematic review of the evidence that was used by the US Preventive Services Task Force (USPSTF) to make its recent recommendations on universal autism screening.2 The USPSTF concluded that there is currently insufficient evidence to assess the benefits of universal screening for autism spectrum disorder (ASD) in young children. In particular, the USPSTF noted that no study has directly compared the long-term outcomes of screened vs nonscreened children and, further, studies of the efficacy of early ASD treatment have not been based on samples identified through screening. Thus, the USPSTF concludes that the long-term benefits and harms of screening in the general population cannot yet be determined. The report was met with considerable controversy. The president of the American Academy of Pediatrics (AAP) promptly issued a statement noting that the USPSTF recommendations “run counter to AAP guidelines” and that the “AAP remains committed to its recommendation for the timely screening and identification of children who benefit from early intervention and treatment.”3 Autism advocacy organizations and US Reps Chris Smith and Mike Doyle, co-chairs of the Congressional Autism Caucus, urged the USPSTF to reconsider their recommendations on universal autism screening. What then is the basis of this controversy? The AAP and other professional and advocacy organizations that support universal autism screening have based their current practice guidelines on several research findings, which are described in the review by McPheeters et al.1 First, autism is a prevalent condition, affecting 1 in 68 children in the United States, and associated with significant short- and long-term burdens.4 The lifetime cost of supporting an individual with ASD is estimated to be $1.4 million. That cost is $2.4 million for those who also have an intellectual disability.5 Second, current autism screening tools, while not perfect, adequately detect ASD in children between approximately 18 and 36 months in age.6,7 The most commonly used tool is a parent questionnaire that requires little training by the health care professionals and takes less than 5 minutes to complete. If a child’s score falls in a questionable range, then an additional 5 to 10 minutes of follow-up questions are needed. Large studies conducted in community primary care settings have found that, of those children who fail the screen, about 50% will be diagnosed with ASD, and 98% will have an actionable developmental concern.6,7 Although the data on false negatives are scant, the available evidence suggests that the current screening tool does not miss a substantial number of children. All children who fail the screen can be referred for infant-toddler assessment and intervention services through Part C of the Individuals with Disabilities and Education Act, a program supported by a federal grant established in 1986 by Congress. Third, studies have shown that screening leads to earlier referral and diagnosis.8 Most children identified through screening have not been previously identified by either the pediatrician or a parent. Children who are screened, on average, are diagnosed earlier and thus receive services at an earlier age. This finding is especially significant for African American and Hispanic children, who tend to be diagnosed and access services at a later age than do white children.9 The majority of states have passed legislation that mandates insurance benefits for early intervention for children with diagnosed ASD. Finally, studies evaluating the efficacy of early intervention show significant improvements in cognitive and language outcomes, and a younger age of enrollment in treatment has been shown to result in better outcomes.10,11 In short, research has shown that universal screening leads to earlier diagnosis and earlier access to intervention and, further, that earlier intervention leads to better outcomes; however, no study has yet been conducted that examines whether screening, per se, leads to better outcomes. Such a study would require a large representative group of children from the general population to be randomly assigned to receive or not receive autism screening and then be followed up longitudinally to assess the impact of screening on the long-term outcomes of these children and their families, as well as the overall societal cost. Studies on the efficacy of early intervention in samples of children younger than 3 years who were identified through screening are also needed. Interventions appropriate for children with ASD younger than 3 years have been developed and evaluated. A systematic review of 24 studies related to intervention for children with ASD younger than 3 years was recently published.12 Compared with interventions for preschool-aged children, interventions for children younger than 3 years more often intensively involve parents and use naturalistic developmental behavioral approaches.13 Such interventions usually are delivered by parents in the context of everyday routines and the parents’ interactions with their children, and all are designed to promote learning, engagement, and communication and reduce behavioral challenges. The review identified 6 randomized clinical trials that assessed the efficacy of intervention in children with ASD younger than 3 years, with treatments ranging from 8 weeks to 2 to 3 years in their duration. All of these trials reported significantly improved outcomes relative to the comparison groups. Effect sizes for the domains of joint attention (a core symptom of autism) and expressive language were moderate to large. Other research has shown that access to early intervention for children younger than 3 years also results in reduced parenting stress.14 While further research on the long-term impact of universal ASD screening is certainly warranted, research on several other questions related to ASD screening and early intervention is also sorely needed. First, future studies should capitalize on the recent advances in technology and our understanding of the genetic and biological bases of ASD to improve screening accuracy and decrease the age of detection even further. The development of early intervention methods for infants at risk for ASD is currently under way.15 Second, the reasons for the discrepancies in age of ASD diagnosis for children of differing ethnic/racial and economic backgrounds need to be better understood, so that early access to treatment can be provided in a more equitable manner. Third, most studies on ASD screening report that a substantial number of parents do not promptly pursue a diagnostic evaluation after learning that their child failed an ASD screen. Strategies for improving the rates of follow-up for diagnostic assessment postscreening should be examined and tested. Fourth, the development and evaluation of broader service system interventions that are feasible and scalable and rapidly engage children with ASD younger than 3 years in early intervention are needed. Finally, because many communities do not have access to professionals fully trained in the direct delivery or coaching of parents in providing treatment for young children with ASD, there is a need for innovative methods to increase the access to early intervention in low-resource communities worldwide. In conclusion, although studies that directly compare the long-term outcomes of screened vs nonscreened children in the general population are needed, there is ample evidence that justifies the continued practice of universal autism screening as recommended by the AAP. Studies indicate that available screening tools do identify children with ASD who would have been otherwise missed and children who begin intervention at an earlier age have improved outcomes. The current guidelines that encourage universal autism screening offer the best chance for individuals with ASD to reach their full potential and lead productive lives. We should, therefore, stay the course while continuing to advance our knowledge about the full impact of autism screening. Back to top Article Information Corresponding Author: Geraldine Dawson, PhD, Duke Center for Autism and Brain Development, Duke University School of Medicine, 2608 Erwin Rd, Durham, NC 27705 (geraldine.dawson@duke.edu). Published Online: February 16, 2016. doi:10.1001/jamapediatrics.2016.0163. Conflict of Interest Disclosures: Dr Dawson has received authorship royalties from Guilford Publications and Oxford University Press and is on the scientific advisory boards of Janssen Research and Development, Roche Pharmaceuticals, Akili Inc, and Progenity Inc, for which she receives travel reimbursement and honoraria. Disclaimer: This Editorial was written as a faculty member of Duke University. The opinions expressed in this article are those of the author and do not reflect the official position of Duke University. References 1. McPheeters ML, Weitlauf A, Vehorn A, et al. Screening for Autism Spectrum Disorder in Young Children: A Systematic Evidence Review for the US Preventive Services Task Force: Evidence Synthesis No. 129 [AHRQ Publication No. 13-05185-EF-1]. Rockville, MD: Agency for Healthcare Research and Quality; 2016. 2. Siu AL; US Preventive Services Task Force (USPSTF). Screening for autism spectrum disorder in young children: US Preventive Services Task Force Recommendation Statement [published online February 16, 2016]. JAMA. doi:10.1001/jama.2016.0018.Google Scholar 3. Hassink S. AAP statement on US Preventive Services Task Force draft recommendation statement on autism screening. https://www.aap.org/en-us/about-the-aap/aap-press-room/pages/AAP-Statement-on-U-S-Preventive-Services-Task-Force-Draft-Recommendation-Statement-on-Autism-Screening.aspx. Published August 3, 2015. Accessed January 2, 2016. 4. Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators; Centers for Disease Control and Prevention (CDC). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveill Summ. 2014;63(2):1-21.PubMedGoogle Scholar 5. Buescher AV, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr. 2014;168(8):721-728.PubMedGoogle ScholarCrossref 6. Robins DL, Casagrande K, Barton M, Chen CM, Dumont-Mathieu T, Fein D. Validation of the Modified Checklist for Autism in Toddlers, Revised With Follow-up (M-CHAT-R/F). Pediatrics. 2014;133(1):37-45.PubMedGoogle ScholarCrossref 7. Chlebowski C, Robins DL, Barton ML, Fein D. Large-scale use of the Modified Checklist for Autism in Low-Risk Toddlers. Pediatrics. 2013;131(4):e1121-e1127.PubMedGoogle ScholarCrossref 8. Miller JS, Gabrielsen T, Villalobos M, et al. The each child study: systematic screening for autism spectrum disorders in a pediatric setting. Pediatrics. 2011;127(5):866-871.PubMedGoogle ScholarCrossref 9. Mandell DS, Listerud J, Levy SE, Pinto-Martin JA. Race differences in the age at diagnosis among Medicaid-eligible children with autism. J Am Acad Child Adolesc Psychiatry. 2002;41(12):1447-1453.PubMedGoogle ScholarCrossref 10. Rogers SJ, Estes A, Lord C, et al. Effects of a brief Early Start Denver model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: a randomized controlled trial. J Am Acad Child Adolesc Psychiatry. 2012;51(10):1052-1065.PubMedGoogle ScholarCrossref 11. Aldred C, Green J, Emsley R, McConachie H. Brief report: mediation of treatment effect in a communication intervention for pre-school children with autism. J Autism Dev Disord. 2012;42(3):447-454.PubMedGoogle ScholarCrossref 12. Zwaigenbaum L, Bauman ML, Choueiri R, et al. Early intervention for children with autism spectrum disorder under 3 years of age: recommendations for practice and research. Pediatrics. 2015;136(suppl 1):S60-S81.PubMedGoogle ScholarCrossref 13. Schreibman L, Dawson G, Stahmer AC, et al. Naturalistic developmental behavioral interventions: empirically validated treatments for autism spectrum disorder. J Autism Dev Disord. 2015;45(8):2411-2428.PubMedGoogle ScholarCrossref 14. Estes A, Vismara L, Mercado C, et al. The impact of parent-delivered intervention on parents of very young children with autism. J Autism Dev Disord. 2014;44(2):353-365.PubMedGoogle ScholarCrossref 15. Green J, Charman T, Pickles A, et al; BASIS team. Parent-mediated intervention versus no intervention for infants at high risk of autism: a parallel, single-blind, randomised trial. Lancet Psychiatry. 2015;2(2):133-140.PubMedGoogle ScholarCrossref

Journal

JAMA PediatricsAmerican Medical Association

Published: Jun 1, 2016

Keywords: autistic disorder,child psychiatry,preschool child,diagnostic techniques and procedures,practice guidelines,questionnaires,diagnosis, psychiatric,screening,toddler,screening test,autism spectrum disorder,pediatric neurology,american academy of pediatrics,united states preventive services task force,delayed diagnosis

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